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PAH won’t stop me living my life to the full

This article was developed in collaboration with Actelion Pharmaceuticals UK who also provided funding. Contributors to this article did not receive payment for their involvement.

Tess Jewson

PAH Patient and Professional Musician

Tess Jewson was just 17 when she was diagnosed with
pulmonary arterial hypertension (PAH), but she’s refused to let this rare
disease stop her living her life to the full.

Music teacher, Tess Jewson, was just 17 when she
was diagnosed with PAH. She had always suffered with asthma as a child but,
during a night out with friends, began to feel dizzy and severely out of
breath. After doctors ran a series of tests, Tess was told that a congenital
heart condition had led to pulmonary hypertension (PH) with Eisenmenger
syndrome — and that she might have only months to live.

Tess says the medication she has been prescribed,
the managed care she receives and the support from her family and friends have
all helped change that dire prognosis.

She also thinks her positive mental attitude has
made a difference. After her initial diagnosis and months of successful
treatment, she was discharged from hospital. She packed her bags and went to
university to study music. “I had a place at Southampton and nothing was going
to stop me getting there,” she says.

I can’t work full-time because of PAH

Even so, her life did drastically change. She had
to give up the trumpet (“That was my main study — so having it taken away from
me was terrible”) and after going out with friends she had to rest the next
day.

She also isn’t able to work full-time and says it
can be frustrating that the public and even some clinicians don’t know enough
about the condition and how chronic it can be, especially as it’s an invisible
illness for many PAH patients.

“PHA UK offer great support”

Despite these challenges, Tess is keen to allay the
fears of anyone newly diagnosed with PAH. “There is very good support
available,” she says. “I’d direct people to PHA UK — the Pulmonary Hypertension
Association — in the first instance. Also, appropriate treatment and ongoing
management of the condition with your healthcare team and support network can
now help you live the life you want to live. Look at me: I’m still going
strong. ”

Don’t let it hold you back. As I always say: “I don’t live with pulmonary hypertension. Pulmonary hypertension lives with me. ”

This Rare Disease Day Actelion is supporting a number of initiatives. Check out any of the following hashtags to see what else is happening this #RareDiseaseDay #RareDiseaseDayChat #ShowYourRare #RareReality﻿